An Authentic, Sometimes Gritty, and Always Hopeful Blog for All Who Live with Severe Physical Pain

Friday, February 1, 2013

Living Always with a "Plan B"

Cancellation...rescheduling...not showing up...Plan B...

This is always a part of my life.

Cold, sharp winds have blown into my part of Virginia--arriving late yesterday afternoon. Feeling better than usual, I spent most of the day out, which is rare for me. Having just finished being with my future daughter-in-law going over discuss wedding plans, I was walking to my car, wrapped tightly in my coat against cold winds that had blown in while we had been together. Despite my effort, the cold struck my face with what felt like tiny arrows of electricity. Hitting their mark, I knew I was in for it.

Fun time...over. Any plans on the calendar tomorrow--cancelled. (Particularly since this strong cold winds were to stay for awhile.)

Dang it!One of my plans was for my annual check-up for early this morning--90 minutes worth! I scheduled it almost a year ago. The doctor’s office would not be happy, nor was I, because the next available check-up appointment would likely be months away.

(...and who knows if I’d be able to go even then?)

Since I have a good relationship with my physician, I texted him to give him a heads-up, telling him that the cold winds had increased my face pain terribly. I was sure that, because he gets my pain more than any other physician I've seen, with the exception of Dr. (Benjamin) Carson, I would need no further explanation.

I was wrong. Here's He replied with this:

“Dear Judi, getting an appointment for a regular visit is easy but the 90 minute slots for physicals scheduled far in advance are hard to come by on short notice when all of my patients schedule a physical...It usually takes about 3-4 months to find an open physical slot when someone wishes to reschedule.”

(Yeah...tell me something I don’t already know).

Ouch. At first I felt embarrassed--I feel I am always disappointing someone. I considered trying to find a friend who could drive me; or I thought, maybe if I took a percocet, and brought along some ice and hot packs, I could get through it.

That's crazy talk. I realized immediately. I have enough history with this illness to know there was no way I could get through a 90 minute anything with this pain, much less undergo a physical examination of this magnitude. I've been down that road many times before.

Here's some examples:

Once,when I felt I could not miss a school meeting, I wound up literally running from the quiet room packed with people, heels clicking on the tile floor, when the air conditioner suddenly forced cold air down on top of me...I made it to the bathroom before I began to sob in pain.

Another time I was determined not to show I was in pain during an important meeting. Somehow, I managed to sit still despite there being a war going on inside my face. Afterwards, I waited until everyone left, pretending to be busy with some paperwork. I was afraid that as soon as I moved, I would collapse in pain. I did.

- I’ve fainted in public, requiring the rescue squad to be called;- I’ve cried aloud in the middle of church when I should have stayed home.

I could go on and on...I'm sure hundreds of you reading this can relate.

Pain humiliates me. It leaves me weak and judged by others. It makes people look at me strangely, and leaves me as a memory of being that woman or that patient who did something weird, or as the one you can’t depend on showing up, or staying until the end.

It humbles me.

I can not win the acceptance of others easily by my actions any longer.

But, oh, how it has freed me!

I live without the need to be seen as any better, brighter,

stronger, or holy than others.

How it has freed my heart!

I love others better. Having little need to compare myself to others, I am free to care about people without judgment.

I care. I can listen. I can help.

Let me know if you need help. I am here for you.Contact me using the tab at the top.

10 comments:

Yes, not being consistent in the things that we do is one of the hardest consequences of this pain. I'm disappointed that your doctor wasn't more sympathetic with you, especially since he knew your pain history.

Thanks for speaking from your heart. You connect with those of us in pain. Sometimes it takes going through the tough times to be able to help others in difficult situations. I'm grateful that you write from your humiliating, painful experiences, so that others are deeply blessed.

Thanks, ginigirl. In a perfect world, my doctor would not only be sympathetic, but somehow make special accommodations for me...but it's not a perfect world is it? I write to validate for all who suffer, and to explain to others who care about us! And most of us, to keep looking up! I hope it blesses others at times...I know others, like you, sure do keep me going! Take care, friend.

Judi-I sit here-searching for "compassion" to send your way-and my fingers start to pound the keys! Anger is rising inside me as I drum my fingers across the keys-images fly through me~~~I think of standing beside you, my arm wrapped around you in Love, as I prepare to "address this doctor" my eyes are LOCKED on his-and I begin to let words flow~~~

"Dear Doctor" This is your patient-JUDI-you remember her, I know you do! Judi suffers with the worst Chronic Pain-she stands out in your "memory bank" because of one particular reason~~~ You can't Fix Chronic Pain and that must drive you to distraction as a Doctor! Somewhere inside you exists a heart-seriously there must be some form of compassion inside you--or has it slowly moved to the side as you had some secretary dictate this pathetic "punishment letter" to Judi--trying to shame her because PAIN blocks the Path of you giving this amazing woman every moment of compassion possible!!

Do you even have a clue as to what it takes from Judi to put one foot in front of the other each day of her life? Would you be truly willing to step forward and spend ONE day of your busy life with Judi--letting her PAIN transfer from the beautiful face of this woman to your face--tell me Doctor, do you really have the guts to do this?

If you had ever lived in constant agony-fighting against an enemy that can't be seen, only felt and all you can do is watch as the "person" you once were, is chewed up, stomped on and spit out by Chronic Pain--tell me Doctor, if it might bother you just a bit to receive a "lecture" about appointment times being missed because Pain has shown its ugly side and nobody is going anywhere--a private war wages on between Judi and Pain. Doctor-you don't even come close to understanding how God has blessed this woman.

As a tiny reminder Doctor--this might come back one day to you--when One Greater than all of us might ask you "When did you see me Naked and Clothe Me, or saw me Hungry and Fed me?" Believe me Doctor, those words DO go on. How I pray you will reach deep inside and never allow such callous treatment of a fellow human being to flow out of you! One other thing about Judi that you forgot Doctor--She will always extend the hand of LOVE out to all-even you!

Oh Doctor-as for me, I too fight with Chronic Pain every day of my life and it is by the grace of God and Judi and others-especially my own Doctor-that I am able to keep going, facing one day at a time. As Judi says, its not a perfect world, how I pray you can find the way back to the path of true compassion for your patients.

As to your "callous appointment reminder" please take the paper, carefully form it into a wad and please put it "where the Sun does not Shine."

Judi-please know you are LOVED beyond all these words! Maybe some of my anger can make those cold winds move away from you and bring a measure of Peace back to you.

I know you are feeling anger/frustration on my behalf and I appreciate your concern so much, dear one. But, honestly, this doctor is more sympathetic than most. Perhaps he was simply giving me "the line" with his text. Yes, I wish--how I wish--that he acknowledged how difficult my journey can be.

So, pause and take a deep breath, friend.

I believe it is simply just SO HARD to "get" the kind of pain you and I live with. We show no physical sign of injury; we are not cut open, broken, bleeding. And when we are able to be out and about we appear pretty much like most others, even if a bit slower or quieter at times.

I pray we can help our doctors better understand our pain, to help others like us. I always try to educate and advocate...but his text showed I must do more. God is in this.

Thank you Judi- for helping me to open my heart-cast anger aside and look to God for help. Your statement of it being SO HARD for others to get the REAL picture of PAIN--is "painfully true" and I do feel sadness,anger-all the emotions and so much more when I am trying to explain my Pain to others.

It gets really hard when Pain has us beaten down--as a dear friend just told me "martha I do not know HOW you live with such Pain-but you are doing it.'

My heart is silently thinking--"Can I do this?" Yes-with HIS help, we WILL keep going forward....

Yes you can, because it's not YOU, but the One who lives inside of you who will be strong for you. Same for me. If we keep ourselves focused on Him. No one else can get our pain and what we go through on a daily, and moment-by-moment basis...no one in this world. Only Christ, who suffered for our sake, so that our suffering is not in vain.

Now, only if I can LIVE like I really believe what I preach!? There's the rub! (In other words, I can talk a big talk, but my walk is really like this: walk a few steps, fall down, walk a few more, fall down...)

Judi,I love the image you gave of "walk a few steps, fall down, walk a few more, fall down" and yes--it is a moment by moment basis~~about 30 minutes ago, I went from a tolerable pain level- to a sudden burst of Pain that had me in total misery.

but i am learning new lessons each day. God has sent me wonderful teachers and loving friends-- you are right there-- i don't have enough in me right now to truly give the words of praise my heart wants to share... how i do wish we could give each other a loving HUG... martha

Judi-I relate so much to that feeling of head propped up and with me-neck propped against pillows and I do not want to move~~praying, praying TIME will help it ease.

Last night we decided to attend Mass at another small community near us and as I went to get in our car, my weak leg decided it was time to crumble and lets just say I landed in the car--safe and sound but nothing graceful about it. My sweet husband suggested I stay home~~worried about me~~I feel guilt about that. But I insisted and we went~~it was a challenge but my heart told me I needed time with the Lord.

This church is smaller, quieter and it brought us both a sense of peace, giving us time to shut our eyes, open our hearts and be with HIM. On our way home, we stopped for dinner-I got through it and was SO ready to hit the bed when we got home.

It bothers me when I must tell Matt--"just go without me" because I can't throw the clothes on, then try to put some form of a "happy look" on my face---when its not there.

You are so right--learning to accept the Call to Quiet.... I will not deny that my first urge is to push forward-but it is so hard now when this Pain flattens me, and I am giving it respect--big time!